Reflections

In her book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhardt describes the frustration of having to remain in bed for the duration of a three-week holiday in Paris. She had caught a virus on the plane journey from California which completely knocked her down, and from which she still hasn't recovered, fifteen years later. Although very unfortunate for Toni, I am so glad she chose to share her experience of developing post-viral (and later chronic) fatigue. Having spent the past week in Spain with my parents, I have been coming up against this notion of what a "holiday" should look like...how much activity and gadding about is required to constitute a successful trip? These questions have been plaguing me every day until I remembered Toni's book. Of course it would be preferable to have sufficient energy to get out there and dip a toe in the Mediterranean, but it's just not possible sometimes - when the  mid-morning migraine persists, and the sore throat will not be pacified by analgesics or copious infusions of honey-and-lemon. Some days you get to the point where a small outing to the seafront turns in to an endurance test; fighting the pain of aching joints and throbbing head through gritted teeth, and then the payback of hours in bed afterwards to compensate for pushing it too far. Saying this, I am fully aware that a certain amount of pushing oneself is necessary to living a balanced life, even with fatigue. The key, for anyone either sick or well, is to learn to listen to your body so that you know when to push and went to rest. There is no established universal indicator. Today, for example, knowing that I have a 10pm flight to catch this evening back to the UK, and painfully aware of my limits when it comes to travel, I have decided against going out to the beach with my Mum who is keen to make sure my "holiday" is as "fun" as possible. Understandable, of course, but now that my definition of those words has shifted to mean something altogether different I am no longer bound by feelings of how I "should" spend my time. Sitting quietly, listening to a Paul McCartney in session on BBC 6 music catch-up and writing this seems to me a perfectly fulfilling way to pass the time on my last day here.

Since discovering that I may never fully recover my energy I have read as many accounts of post-viral/chronic illness as possible. And all sufferers conclude with the same message - this is an opportunity to learn to trust; in terms of knowing your tolerance levels and trusting those around you to accept when you have decided, one way or the other, whether to push or to rest. This constant balancing act is one that we all must perform but for those of us struggling with fatigue it is perhaps more pronounced, and there is perhaps more at stake when you choose to go against your instincts and end up either inevitably burning out (again) or missing out on an opportunity to get out there and experience life. Regret, and the accompanying self-flagellation, is part and parcel of this process of determining the best way to live moment-to-moment. For me, the challenge lies in letting go of this regret and learning instead to appreciate the unexpected small pleasures contained within a day of seemingly doing nothing. I'm glad, now, that Mum and I stayed in today because we received a surprise visit from a dear family friend whom I hadn't seen in years. She was only able to stay for an hour which was perfect really as it gave us time to catch up and make promises to see more of each other without causing me to get too drained. Socialising is one of the most tiring activities so it's often a blessing when it occurs spontaneously and without any expectations of how things should go. There will always be times when it feels like the "wrong" decision has been made and opportunities have been wasted or energy has been expended on something not worthwhile, and that's ok as long as every once in a while we can enjoy a carefree day or two free from such regret, simply following one's instincts and living in the moment. Equally, an encounter with one friend who understands and appreciates you for who you are, tiredness and all, makes it easier to bear all those encounters with those who are unable to empathise.

Suffice it to say that although my time away has not borne all the hallmarks of a typical holiday in the sun, I certainly feel emotionally restored and ready to face those challenges waiting for me at home. I made a decision whilst here - to stop trying so hard and to stop looking for approval outside of myself. I have a sneaky suspicion that I may end up enjoying life more!

Escape

I'm writing this from my parent's house in the south of Spain, sitting outside in the shade with the light October breeze tickling the leaves on the tropical-looking trees. I've come here in an attempt to get away from the stresses and strains of my "normal" life back in UK, hoping the relaxation and warm air will facilitate a decrease in anxiety and an increase in energy. So far (second day here) I definitely feel more relaxed though I have been confined mostly to bed/sofa - I'm still recovering from the journey which left me exhausted.

After yet another restless night spent tossing and turning, listening to the incessant barking of neglected dogs, I came to the conclusion that I must once again return to that most cathartic of activities: writing. I often feel that I have very little to offer the world in this state of constant crippling fatigue; a state that descended upon me some six months ago and is showing no signs of lifting any time soon. At the age of 26 (almost 27) I feel this to be most unfair and entirely incongruous with my lively, sociable personality. That's the saddest part - no longer able to enjoy meeting with friends, I am forced to spend long, protracted days alone speculating on what I could be doing if only I had the energy. And yet, determined to live fully within the constraints of illness, I am somehow able to derive a kind of pleasure from the solitude, viewing it as a blessing in disguise; a much-needed reprieve from the stresses and strains of a fully integrated life. I have the luxury of getting to know myself better and to think creatively about how to use what little energy I do have in a way that's fulfilling. Whilst grappling with the recurring frustration of "what am I going to do with my life?" and equally distressing, "how on earth can I contribute positively to the world when I'm struggling to function on a basic level?!" I was suddenly able to perceive clearly that there is a way forward. I realised that my energy levels can be exponentially increased through altruistic action. Not in the sense of sacrificing my own needs for others, or somehow acting as a martyr for the sake of the "greater good", but in a holistic, joyful, unfettered way - I realised that it is absolutely possible to create value in society whilst respecting one's given set of physical circumstances. The important distinction to make is that in order to pursue a life of absolute fulfillment, it is vital to ask yourself two simple questions: "what makes me happy?" and "what am I good at?" Tormented by sleeplessness and plagued by doubt and insecurities I asked myself these questions last night and the answer came, clear and resounding - I need to write.

So here I am, getting back to it. Creating something rather than merely consuming. Connecting with the world rather than simply disconnecting; feeling unworthy. Illness has a terrible habit of causing it's host to lose all sense of self. You forget who you are and what your purpose is. A daily battle must be waged against this insidious thinking if any progress is to be made. It's an invisible battle which is what makes it all the more deadly. From the outside, a person fighting this particular demon must probably look completely inactive; idle even. But if somehow it was possible to look deeper, in to that person's soul, then a momentous struggle could be witnessed. I have to mention at this point my Buddhist practice. It is my daily practice (chanting, study, and faith) that gives me the courage and tenacity to continue fighting my own negativity. The real benefit of practicing comes at those times when I feel I've hit rock bottom, that's when all those hours sat chanting and all that time spent studying and listening to others experiences finally kick in to action to support my life and raise me out of that hole. There is nothing more lonely than illness; it's when your friends desert you and your social life evaporates. A vacuum is created which can only be filled - in my case by a strong resolve to believe in my own potential coupled with a fierce determination to overcome this pain-filled cycle of exhaustion. I intend to use this blog to capture in words the process by which I can and will continuously come to terms with chronic illness in my life. I don't know how often I will post as I can never predict how much/little energy I will have at my disposal from one day to the next. I don't want this to become a burden; something I feel obliged to keep on top of. I prefer to think of this blog as an escape, a place I can come to when the feelings of being misunderstood threaten to overwhelm.

Until then...